1. < Caregivers

Caregiving Frustrations: When the stuff hits the fan!

Posted by bradmm @bradmm, Apr 13, 2019

My wife has outlived her expected lifespan (MDS, RCMD) by quite a long time and I FEEL like the current status quo will continue indefinitely. However, I suspect that one day things could very well take a turn for the worse and we'll get the BAD NEWS. AML is the next step in this progression. If that day comes, what am I to say? I've been telling her for years that NOBODY knows what tomorrow will bring, we never know how long we have but getting a(another) bad diagnosis will push her over the edge and me along with her. Words only go so far. I see fear now and I know more bad news will only freak her out. I will, of course, stay by her side come hell or high water, but it won't be enough,

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maryterry | @maryterry | Apr 21, 2019

I'm in the same situation with my 73 year old husband. We both cried for days after diagnosis of Alz and continue to struggle after nearly 9 mos. I see his daily decline and it breaks my heart. I've gone to Alz and other support groups and that's helped./. My 80 year old radiologist brother was diagnosed with LBD at same time!! I look for and use all the support I can get. This is not what I ever dreamt our future would hold. I started having caregivers last week so that I can get out in peace and give him help and stimulation. Thanks all for this site!!!

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 22, 2019
In reply to @providence1960 "It is so hard to deal with the helplessness I feel when mom says she wants..." + (show)
@providence1960

It is so hard to deal with the helplessness I feel when mom says she wants to be well and wants to know what is wrong with her....I just encourage her and say she will be herself again and then distraction. Her doctors advised me just be encouraging as possible. When she was first told her diagnosis she was despondent and cried for days...then forgetfulness mercifully took that pain away. Now it is a day to day sometimes moment to moment experience. She has crossed over from mild to more than moderate and I know that severe will come but I’m just staying inThe present as much as I can. I know so many others are in the same boat....I’m doing my best and that’s all I can do. This site helps a lot.

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Hi @providence1960 I am sorry to read of your mom. My hardest caregiving times were those when I had no answers to her medical questions. ‘Our best’ is all any of us caregivers can do, especially when we get those feelings that it is not enough for our loved ones. So glad you find this site helpful!

I hope you had a nice weekend.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 22, 2019
In reply to @maryterry "I'm in the same situation with my 73 year old husband. We both cried for days..." + (show)
@maryterry

I'm in the same situation with my 73 year old husband. We both cried for days after diagnosis of Alz and continue to struggle after nearly 9 mos. I see his daily decline and it breaks my heart. I've gone to Alz and other support groups and that's helped./. My 80 year old radiologist brother was diagnosed with LBD at same time!! I look for and use all the support I can get. This is not what I ever dreamt our future would hold. I started having caregivers last week so that I can get out in peace and give him help and stimulation. Thanks all for this site!!!

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Hello @maryterry I am so sad to read of your husband’s healthcare journey. It is indeed a path we never foresee. Devastating diagnoses are beyond crushing and take time to process for sure. It certainly did for my wife and me. That said, I do believe it is better to share it, cry, rage, etc. than what I saw happen in my in-laws’ family when denial was their choice. So much precious time wasted and lost to them.

It is great to read you are having help! Was it easy to find?

I hope the sun is shining wherever you are today!

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debrat1 | @debrat1 | May 22, 2019
In reply to @bradmm "Thank you all but my sense of your comments is that I was looking for help..." + (show)
@bradmm

Thank you all but my sense of your comments is that I was looking for help for me dealing with this reality. I'm mostly looking for how I will help her deal with this. She struggles now and, if/when it gets worse, I know she will lose all quality of life. It's far easier for me to sit back and try to be the cheerleader than for her to have to face her own destiny. How does the patient come to terms with what they face? I'm sure it's different for everyone but, to come full circle, maybe that's where my feelings come in... the feeling of helplessness watching your loved one deal with something and knowing there's not a damned thing to can really do to change it. I think it's common for some people (men especially...?) to want to "fix" things when they go wrong. I know that's been my role for many years. However, there are some things no one can fix.

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When you find the answer please let me know. It’s me waiting for the axe to fall on my own destiny. I posted on another discussion area about this but in reverse. It’s me trying to figure out how to support my family by getting them to accept the possibility, more than likely, my bad luck of the gene pool draw and that I’m already seeing signs that are not good. My father, his mother and two of his brothers had this. It’s possible my grandmother’s father to brother but we will never know. I have a very best friend who discusses it with me who sees the signs. It’s my husband and adult children who blow it off. I’m needing them to be diligent and help prepare for the worse. If it doesn’t happen then TERRIFIC!

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Ginger, Volunteer Mentor | @gingerw | May 23, 2019
In reply to @debrat1 "When you find the answer please let me know. It’s me waiting for the axe to..." + (show)
@debrat1

When you find the answer please let me know. It’s me waiting for the axe to fall on my own destiny. I posted on another discussion area about this but in reverse. It’s me trying to figure out how to support my family by getting them to accept the possibility, more than likely, my bad luck of the gene pool draw and that I’m already seeing signs that are not good. My father, his mother and two of his brothers had this. It’s possible my grandmother’s father to brother but we will never know. I have a very best friend who discusses it with me who sees the signs. It’s my husband and adult children who blow it off. I’m needing them to be diligent and help prepare for the worse. If it doesn’t happen then TERRIFIC!

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@debrat1 You know the old saying "we can only do what we can do." You can explain to your family the situation and the symptoms that you see now and the possibility of additional things in the future. You can encourage them to accept it and to help you as you go through this journey, as they will certainly go along with you. But you can't force them; we can't force anybody. We can only offer them the information and the tools. What they choose to do with it becomes their decision.

I find this discussion so interesting. My husband's health after his kidney transplant three years ago is much better than mine is at this time. My issues are all autoimmune related. I know the distinct possibilities for the future and each day I I'm grateful to be here and have the health that I have for that day. My husband looks through rose-colored glasses and figures "we'll deal with it as it comes up". I want to consider the possibilities beforehand, and be prepared.
Ginger

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019

Hi @bradmm , I wanted to check in to see how you're doing and your wife? Have you been able to shift the focus on the here and now?

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bradmm | @bradmm | Jul 17, 2019
In reply to @colleenyoung "Hi @bradmm , I wanted to check in to see how you're doing and your wife?..." + (show)
@colleenyoung

Hi @bradmm , I wanted to check in to see how you're doing and your wife? Have you been able to shift the focus on the here and now?

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Sweet of you to ask! Yes, the focus has shifted to here and now but that's not looking so great at the moment. We got back from Belize in June and she apparently got a cold on the way back. Cold, turned into bronchitis which turned into pneumonia. She was in a great deal of pain from coughing. Along the way, her leg started hurting as much or more so, after 1 visit to PCP and not getting anything to help with her cough or pain (we're changing now!) I took her to ER three times and, on the final visit, she was admitted to hospital where we finally got an x-ray and later MRI of hip which showed that she had a fractured L5 vertebrae, presumably from coughing. Chest problems seem to be resolved but pain in her hip (which moves around because it's an aggrieved nerve causing the problem) is still ongoing. It's getting better but it's a slow process. In the middle of all that, I passed out while waiting in line at a sub shop. Refused ER to take me to hospital but went later on my own and spent the night wired to a monitor. Nothing found. Chose to go to a cardiologist just because I'm older, it made sense and he sent me to do a calcium score which is an indirect determinant of arteriosclerosis. It came back very high and at a very high risk which is VERY IRRITATING because, for 20 years at least, we have consciously eaten very healthy and I've exercised religiously 4-5x/wk. Both of us feel that we did nothing to cause these problems but they are likely genetic (or simply unexplained). So, yes, we're focusing on the here and now but it's not looking so good. We have each other and that's our main focus at the moment while we just deal with the rest. All we can do.

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bradmm | @bradmm | Jul 17, 2019
In reply to @bradmm "Sweet of you to ask! Yes, the focus has shifted to here and now but that's..." + (show)
@bradmm

Sweet of you to ask! Yes, the focus has shifted to here and now but that's not looking so great at the moment. We got back from Belize in June and she apparently got a cold on the way back. Cold, turned into bronchitis which turned into pneumonia. She was in a great deal of pain from coughing. Along the way, her leg started hurting as much or more so, after 1 visit to PCP and not getting anything to help with her cough or pain (we're changing now!) I took her to ER three times and, on the final visit, she was admitted to hospital where we finally got an x-ray and later MRI of hip which showed that she had a fractured L5 vertebrae, presumably from coughing. Chest problems seem to be resolved but pain in her hip (which moves around because it's an aggrieved nerve causing the problem) is still ongoing. It's getting better but it's a slow process. In the middle of all that, I passed out while waiting in line at a sub shop. Refused ER to take me to hospital but went later on my own and spent the night wired to a monitor. Nothing found. Chose to go to a cardiologist just because I'm older, it made sense and he sent me to do a calcium score which is an indirect determinant of arteriosclerosis. It came back very high and at a very high risk which is VERY IRRITATING because, for 20 years at least, we have consciously eaten very healthy and I've exercised religiously 4-5x/wk. Both of us feel that we did nothing to cause these problems but they are likely genetic (or simply unexplained). So, yes, we're focusing on the here and now but it's not looking so good. We have each other and that's our main focus at the moment while we just deal with the rest. All we can do.

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On the other hand, learning that I'm at high risk in advance is better than being hit with a heart attack out of the blue since I've never had any symptoms. Wife and I were able to celebrate my 65th birthday and our 25th anniversary and I was able to go diving... something that might be limited in the future now. We will continue to pursue FUN wherever we can find it!

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bradmm | @bradmm | Jul 17, 2019
In reply to @bradmm "On the other hand, learning that I'm at high risk in advance is better than being..." + (show)
@bradmm

On the other hand, learning that I'm at high risk in advance is better than being hit with a heart attack out of the blue since I've never had any symptoms. Wife and I were able to celebrate my 65th birthday and our 25th anniversary and I was able to go diving... something that might be limited in the future now. We will continue to pursue FUN wherever we can find it!

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Sorry, I meant that while we were in Belize we got to celebrate. 🙂

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 19, 2019
In reply to @bradmm "Sweet of you to ask! Yes, the focus has shifted to here and now but that's..." + (show)
@bradmm

Sweet of you to ask! Yes, the focus has shifted to here and now but that's not looking so great at the moment. We got back from Belize in June and she apparently got a cold on the way back. Cold, turned into bronchitis which turned into pneumonia. She was in a great deal of pain from coughing. Along the way, her leg started hurting as much or more so, after 1 visit to PCP and not getting anything to help with her cough or pain (we're changing now!) I took her to ER three times and, on the final visit, she was admitted to hospital where we finally got an x-ray and later MRI of hip which showed that she had a fractured L5 vertebrae, presumably from coughing. Chest problems seem to be resolved but pain in her hip (which moves around because it's an aggrieved nerve causing the problem) is still ongoing. It's getting better but it's a slow process. In the middle of all that, I passed out while waiting in line at a sub shop. Refused ER to take me to hospital but went later on my own and spent the night wired to a monitor. Nothing found. Chose to go to a cardiologist just because I'm older, it made sense and he sent me to do a calcium score which is an indirect determinant of arteriosclerosis. It came back very high and at a very high risk which is VERY IRRITATING because, for 20 years at least, we have consciously eaten very healthy and I've exercised religiously 4-5x/wk. Both of us feel that we did nothing to cause these problems but they are likely genetic (or simply unexplained). So, yes, we're focusing on the here and now but it's not looking so good. We have each other and that's our main focus at the moment while we just deal with the rest. All we can do.

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@bradmn. You story sounds somewhat like mine. When my husband was 64 he also had a calcium score done and the results were awful. He had the test done because his father, grandfather, an great grandfather had all died of heart attacks at age 64. Needless to say, I was stunned. Now 8 years later, he’s in good health taking care of me since I got a brain lesion. We’ve also been focusing on the here and now, but I decided that as long as I felt well enough to do things, we would. We successfully went on a trip to Europe and right now in Crested Butte, CO visiting grandchildren! We take it one day at a time, are prepared, but also, try to have a life and have fun.
It sounds like you’ve been a wonderful caregiver for your wife, so maybe now is the time to take care of yourself. Do some of the things you’ve wanted to do, but also plan for the future. It is so hard. I wish you all the best on this difficult journey and I know your wife is lucky to have you

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